I was finally diagnosed with multiple mental health conditions in my early 20s, having suffered from chronic mental illness since childhood. These diagnoses spurred my interest in mental health advocacy, leading me to opportunities where my lived experience was valued.
Some of these roles were remunerated, recognising my contributions as an “expert by experience”, and initially, I was passionate about sharing my story to create change—particularly for those from ethnic minority backgrounds, like myself, who face worse mental health outcomes. However, over time, I began to feel uneasy about what was essentially the monetisation of my struggles. Organisations benefited from my trauma while continuing to perpetuate the very systemic issues they claimed to address. There are moments when I question whether I am complicit in a system that values my pain more than my expertise.
Beyond the ethical concerns, I wonder what harm this is doing to my own mental health in the long run. The expectation to relive and articulate my trauma as a “lived experience expert” has often come without adequate safeguarding. Over the past five years of advocacy work across numerous projects, I can count on one hand the number that provided appropriate aftercare. This has made me wonder what harm this is doing to my mental health in the long run by repeatedly recounting the most painful moments for the benefit of institutions.
There is also a deeper discomfort that causes internal tension. Whilst I am able to, in a small way, monetise my struggles, there are others with the same illnesses who did not survive. It feels unsettling to know that my pain is recognised only because it can be leveraged by organisations to enhance their reputations or secure funding. Meanwhile, those who are too unwell to participate remain unheard, their suffering unnoticed and uncompensated.
A potential solution could be to forego remuneration altogether, yet the reality is that maintaining a 9-5 job with chronic mental illness has been extremely difficult. This makes paid lived experience work an attractive alternative, even though it often leads to burnout from repeatedly reliving my trauma. In the end, I am left wondering whether I am truly creating meaningful change—or simply allowing my story to be repackaged as a tool for institutional gain. This uncertainty is increased by the failure of most organisations to offer feedback on any impact my story has had, leaving me feeling used and abandoned to heal my reopened wounds alone.
Organisations frequently claim to centre lived experience, yet few genuinely address the structural issues—such as racism, poverty, and employment inequalities—that shape mental health outcomes. My trauma has been extracted, distilled into reports and publications, and used for professional advancement. Whilst researchers add another paper to their repertoire, I am left carrying the emotional burden of revisiting the lowest points of my life. It raises the question: when will lived experience be valued for more than just its ability to serve institutional interests? We are not simply trauma to be packaged into stories as part of a checklist for funding applications. If institutions truly want to champion lived experience, they must ensure that our insights lead to meaningful change, not just performative engagement.
I believe it is possible for organisations to include lived experience advocacy in an ethical manner by ensuring safeguarding protocols are in place and appropriate aftercare is provided. To create genuine systemic change, we need organisations to move beyond tokenistic lived experience opportunities in embedding long-term lived experience roles within organisations themselves.
The Limitations of Lived Experience
This blog is part of our “The Limitations of Lived Experience” series which was open for submissions from NSUN members in January 2025 and published from February 2025. All the blogs in the series are available here.